Dermatomyositis now, too. Contemplating disability…
AnonymousOctober 3, 2012 at 6:04 pm
Has anyone else received a diagnosis of dermatomyositis in addition to CIDP (especially Lewis-Sumner Syndrome)? Add this to the cutaneous lupus diagnosis from last year, and I am starting to feel like the poster child for rare diseases.
I’m not as frightened by this diagnosis as I was when I got the CIDP diagnosis — I knew nothing then and my health had been deteriorating mysteriously for 18 months by the time I got the Dx — but the list of potential complications of this new condition is not a fun one to contemplate.
I have both tolerated and done well on IVIg to date and have very little pain relative to many CIDP patients. I have some nerve damage, a slight limp, and I’m always, always tired. From the cutaneous lupus, I have a very obvious lesion on my face and others that are generally hidden under my hair and clothing. From the dermatomyositis, I have mild joint pain and an itchy rash. All of these are, to me, liveable. I know exactly how fortunate I have been and continue to be. But now I’m having tests for cancers, heart diseases, lung problems, and other things which seem to go hand in hand with dematomyositis — it’s stressful.
I work full time and have two children still at home, both of whom have ADHD, anxiety, and depression. My husband is loving and supportive and amazing, but travels extensively for business. Even before the first symptoms started showing up, life was a tricky balancing act for me. Now I feel overwhelmed and exhausted. I don’t feel that I’m doing the best I could do at work, and I know that my kids need more than I have to give right now. Don’t even ask me about the state of my house. It scares me to think of going on disability, but I’m concerned that the ongoing stress will only cause my health to get worse. The pace at which I’m developing new diseases appears to be accelerating.
I’d appreciate the perspective of my CIDP peers on this issue.
Many thanks and warm wishes to you all.
AnonymousOctober 4, 2012 at 12:30 am
Wow! Hang in there!
I was diagnosed at the end of June and kept trying to push through life i was promoted at work right after I was diagnosed. For the last few months, I was trying to keep up with everything and kept thinking I’ll just adjust and it would all be ok. I just recently decided to take a leave from work so I can focus on my health and figure out how to make adjustments in my life in hopes I can go back to work soon and prove that I am capable and deserving of my promotion (I think it was being questioned right before I left). It has been quite a balancing act with speech and physical therapy, treatments, doctors appointments and regular life. I don’t have kids, just animals and I couldn’t imagine if I had kids! The stress of this disease is a lot to deal with and I have finally accepted that I need to focus on my health so I can focus on everything else once I’ve made necessary adjustments. I felt like it was a sign of defeat at first to take a leave but a few days in and I can tell my stress levels are already better and I KNOW it was the right thing to do.
Good luck and kudos for all you’re doing
AnonymousOctober 4, 2012 at 1:57 am
Thanks, Jmlz! It certainly sounds as though you’ve made a good choice And I hope you are able to make the adjustments and find a new normalcy soon.
I’ve known that I had CIDP for four years now; the symptoms began 18 months before that. It took therapy and antidepressant meds to help me regain my emotional equilibrium once the reality set in. Until this latest Dx, I’ve had very little trouble maintaining a positive attitude. Being sick has helped me to place greater importance on the things that really matter and to let go of lots of less important things. Now I’m starting to think that work — even work I enjoy– costs me too much and gives me too little compared to my family and friends. But it does feel like a failure on my part to stop working.
AnonymousOctober 4, 2012 at 3:22 am
I have never been shy about voicing an opinion. My husband has CIDP –MADSAM and he is stable with IVIG every 3 weeks. I have MS and I am a retired nurse. So I am very familiar with living with autoimmune diseases and taking care of people with multiple health concerns and diseases.. Absolutely take a disability leave. I did some reading about the dermatomyositis. Your cortisol levels must be sky high with all your stress. Those levels staying high can cause permanent damage. You can always go back when things level out. Best of luck Beth and do what is best for you ie. take a disability leave so you can have better quality of life.
October 14, 2013 at 1:46 pm
This is Kathy from Ottawa , Ontario writing this post. I hope your hubby and you are doing okay.
It has been a while since we connected. I would like to send you a personal message but the new site does not give that option – any suggetions how I can do that?
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